Bulbar anxiety

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Bulbar anxiety

Postby joycecaroll on April 13th, 2015, 7:13 am

I'm so sick of this anxiety! I would like to just post what's happened the last 6 months and maybe get some thoughts on it from you guys? I allways feel better after getting some rational pointers from you.

Anyway, here it goes. Daily twitches in tongue started in September -14. Before then I'd had some tongue twitches, but not much. From September until now I've basically been having daily twitches in my tongue. Sometimes a lot, sometimes just a handfull. Some weeks I haven't been feeling them at all, but I haven't been looking either so I don't know if I have silent ones.
Had an EMG of tongue, trapezius, arm, hand and leg done this month, about 6 months after fasciculation onset. This was clean. The neuro saw my tongue and could not see any twitches. He checked bulbar reflexes and everything was fine.

So. I feel like I've done everything I can do. I've done EMG (actually two, I din one in August as well) and there doesn't seem to be any progression so far. The tongue twitches remain, and everytime I feel a twitch there my heart breaks.

What do you guys think? A clean EMG after 6 months - am I in the clear?

Thank you so much for reading! <3
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Re: Bulbar anxiety

Postby misterjuanperalta on April 13th, 2015, 9:13 pm

You're clear.
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Re: Bulbar anxiety

Postby d4twitch on April 13th, 2015, 11:20 pm

You don't have ALS. Move on.
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Re: Bulbar anxiety

Postby Yuliasir on April 13th, 2015, 11:41 pm

many fellows here are twitching in the tongue. you have 2 clean EMG in key area of interest and no progression. So you may proceed to antianxiety therapy (because you could not think reasonably at this stage on your own due to nature of anxiety disorder).

I mean you should not expect immediate release of anxiety on the basis of reasonable facts. Anxiety is a self-sustaining process due to the nature of our neural pathways. Negative thoughts are known to make a closed sustaining excitation loops in the brain, but alas, happy thoughts could not (becasue anxious creature still kicks a bit and is more alert, while happy one is sitting under the tree in sweet relaxation and is an easy prey : ) ) So they will circulate in your mind for a while despite on any rational attempts.
However, you may choose just to be patient, and the pathway would be exhaused with the time, but it would be several times longer and you might even get deeper into it.

but anyway it would be easier with the time.
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Re: Bulbar anxiety

Postby joycecaroll on April 14th, 2015, 4:02 am

I keep fearing that in time other symptoms will start to show. I just have this inner overwhelming feeling that it can't be anything else than ALS. Of course I will die young. Never get to have kids or get married. I love my education, but I'm scared I'll never get to actually work as a nurse cause I'll die before I graduate. It makes me so depressed.

I've read those studies saying some people have clean EMG's for a very long time after fasciculation onset, and still end up with ALS.

1. Still, I don't think I have constant fasciculations. I just feel like 5-10 a day and I never have time to get to a mirror to see them. If I stare at my tongue, there's nothing. No neuro has been able to see them and no EMG of tongue has showed fasciculations. In ALS fasciculations are more or less allways present, right?

2. I've had tongue fasciculations for at least 7 months now, probably more like 10 months. What are the odds that the EMG would have been clean and this is still ALS?
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Re: Bulbar anxiety

Postby Yuliasir on April 14th, 2015, 4:47 am

Joyce,
People DO NOT get such ideas (of being deadly ill or doomed to die young) without the reason. This reason is what you have to find out, I think.

on my point of view, what you may really need is a therapist to speak specifically about that - WHY do you believe so strong that you will have ALS and die young.
Nobody knows the answer, only you. You may prefer and choose do not know it, but it results in what you have - strong fear and beliefs which may spoil your life significantly. It spoils your life already.
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Re: Bulbar anxiety

Postby Ghayes420 on April 14th, 2015, 9:59 am

"I have read those studies that said that people have clean EMG's for a very long time after fascicualtion onset and still end up with ALS."

I am unsure what your point is of sharing this type of information here really is? What studies are you referring to? Walton report or some other rare case study involving one or two patients? Are you a medical professional and able to objectively understand these studies? Define the meaning of "clean"? Is this no fascicualtions seen on EMG? Many fasciculations seen on the EMG? Was the morphology of the fasciculations complex and have a high firing rate? Or were they low grade simple morphology? Was there axonal root degegradation? Were there F-wave latencies on the NCV? Was there a reduced recruitment pattern seen? How do you know for a fact these patients had a "clean" EMG? Did your read their diagnostic evaluations yourself?

My point is that it is not beneficial to you or anyone else here to make that statement when there are many many characteristics of an NCV and EMG in the diagnostic process that unless you are a neuromuscular specialist trained in such things, it is irresponsible to make such blanket statements.

I suggest you take the advice of Yulasir and others here and seek a combination of CBT and medicine to help you through this time. If you truly someday want kids and a marriage and a job in nursing then I hate to inform you but your life stresses are only going to increase from this point forward. I suggest you begin the process of tackling your anxiety now before you begin down those paths.

I am sorry for the tough love but I don't like to see these type of blanket statements made without significant evidence supporting these claims.

And to answer your question, yes, in ALS fascicualtions never stop, ever until the muscle dies. ALS patients, even those with fascics appearing as a first symptom don't get "10-15 twitches a day".
A very proud fasciculator since 8/14/2011. :)
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Re: Bulbar anxiety

Postby misterjuanperalta on April 14th, 2015, 10:22 am

GHayes420, my calf muscles never stop twitching. Now, you are freaking me out.
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Re: Bulbar anxiety

Postby Ghayes420 on April 14th, 2015, 10:51 am

Juan, all my muscles have not stopped twitching for the past 3.5 years. My feet and calves are always going, I am hit with fascics all over hundreds per hour. It's called BFS. :)
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Re: Bulbar anxiety

Postby joycecaroll on April 14th, 2015, 11:14 am

Ghayes420 wrote:"I have read those studies that said that people have clean EMG's for a very long time after fascicualtion onset and still end up with ALS."

I am unsure what your point is of sharing this type of information here really is? What studies are you referring to? Walton report or some other rare case study involving one or two patients? Are you a medical professional and able to objectively understand these studies? Define the meaning of "clean"? Is this no fascicualtions seen on EMG? Many fasciculations seen on the EMG? Was the morphology of the fasciculations complex and have a high firing rate? Or were they low grade simple morphology? Was there axonal root degegradation? Were there F-wave latencies on the NCV? Was there a reduced recruitment pattern seen? How do you know for a fact these patients had a "clean" EMG? Did your read their diagnostic evaluations yourself?

My point is that it is not beneficial to you or anyone else here to make that statement when there are many many characteristics of an NCV and EMG in the diagnostic process that unless you are a neuromuscular specialist trained in such things, it is irresponsible to make such blanket statements.

I suggest you take the advice of Yulasir and others here and seek a combination of CBT and medicine to help you through this time. If you truly someday want kids and a marriage and a job in nursing then I hate to inform you but your life stresses are only going to increase from this point forward. I suggest you begin the process of tackling your anxiety now before you begin down those paths.

I am sorry for the tough love but I don't like to see these type of blanket statements made without significant evidence supporting these claims.

And to answer your question, yes, in ALS fascicualtions never stop, ever until the muscle dies. ALS patients, even those with fascics appearing as a first symptom don't get "10-15 twitches a day".


You've told me this before. I'm not talking about any other studies than the ones discussed in this forum. I'm referring to what other members have told me on here. Members talking about studies describing cases of patients having clean initial EMG's.

I'm not at all claiming to know this is true. Actually I'm kind of sick of reading that kind of crap here. I don't really have anywhere else to turn with my questions, but when I come here I always read something that scares me. For example, people claiming there's studies where patients had initial clean EMG's and clinicals. So, after reading these statements I have a lot of questions. I wan't someone to explain, that's all. Twitchydoc has done his best trying to explain and according to him only a very small fraction of patients have initial clean EMG's. That info is really comforting to me.

I guess the reason I still come here with questions is because I wan't to discuss further what is said in some corners in this forum. When I read something that scares me, I wan't to ask about it and try to understand it.

My neuro says everthing is fine. He says he is 101% sure it's not ALS after my recent EMG. So I start to feel a bit better. And then I come here, and that's when I start to get confused and scared again. I read post's about studies where people have clean EMG's for a really long time and than after up to 18 months they start showing signs of weakness. That's seriously REALLY scary to read. What am I suppoused to do with that information? Of course I'll wan't to bring it up and ask questions.

Now, fot people reading this, let me be clear about me not knowing anything about these studies. It has been claimed on this forum that these studies have been done, but I've not myself read these studies.

I know I'm sick. I am in therapy and on medications, thank you very much. If you wan't me to just stop posting here, than say so and I will. But seriously, this is a forum with a lot of information and speculation, and a great deal of these post's are scary to the anxious person. It will stirr up fear and questions, and I think that's only natural.
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Re: Bulbar anxiety

Postby Ghayes420 on April 14th, 2015, 9:58 pm

Have you heard the term, "Curiosity killed the cat." ? That's what you are doing to your psyche if you continue down this path of trying to understand rare case studies of atypical ALS presentations. Ask TDoc, myself and others. It's not a fun road to travel. I wish I would not have taken that route but I did and now its too late.

Without going into detail, because this is not an ALS site, this is a BFS site....the term "clean" with regards to clinical and EMG and NCV exams is purely subjective. It should only be used by doctors who are neuromuscular specialists and not amateurs on a website or people with a deadly disease or a benign condition. There are several things that can be evident upon clinical exam that are indicative of a neuromuscular condition and several things on an EMG and an NCV that can be indicative of things to come. EMG's are predictive in many ways, more for those with disease and weakness already present, however they tell the doctor what is happening NOW. They are able to tell with absolute certainty what is happening to your nerves and muscles at the time they perform the exam.

That is where is it comes down to the saying that every veteran will come back to on this site..."TRUST YOUR DOCTOR." That's really all that you can do. If you don't trust him, find someone better.

You should NOT stop posting. I would not say that. I would say to STOP digging. Stop trying to understand it all. The head of the neuromuscular clinic at the Mayo told me point blank, "We really don't know much about ALS." So there, straight from the horses mouth. If they don't know, trying to understand the pathology yourself is going to be fruitless and draining. Please trust me on this point. I have made this mistake personally and it will keep you in loop that is difficult to break. I am in therapy myself too because of this incessant need to understand it all.

Again, I said what I did out of tough love. Also probably said it because IMO your BFS sounds very mild in comparison to myself and several others I know with BFS. So please feel relief knowing that you are not anywhere near the intensity on the BFS spectrum that many of us deal with on a daily basis. To say BFS is not a true condition is incorrect and asinine. There are case studies from Harvard Med dating back to the 1950's with patients diagnosed with ALS and it turned out to be BFS (or benign fasciculation) just because the condition was not as well understood as it is today (and is still improving).

Your case is very much typical in presentation of a benign condition and with time you will learn to accept that.
A very proud fasciculator since 8/14/2011. :)
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Re: Bulbar anxiety

Postby joycecaroll on April 15th, 2015, 7:16 am

A lot of good points. Of course I regret ever googling any of my symptoms or reading stuff on here that scares me. But what's done is done, and at this point I'm just trying to find a way out from this anxiety.

So I've read a coulpe of statements from members here claiming that there has been studies resulting in a 14% group of patients with clean EMG's and clean clnicals, that later developed ALS. In response to this, other members have claimed that these studies was done in the 90's with less advanced methods and that this might explain the high number of false negatives.

Furthermore, none of the neuros I've seen (a total of 4, one of them a neuromuscular specialist) are familiar with these studies so I can't ask them to explain. They all look like questionmarks when I bring it up and say that a clean EMG means no ALS, simple as that. Still the post's I've read here keeps creating doubts in my mind and that's why I come here to ask you to explain it further.

I know how obsessive I'm being, trust me. But I'm so freaking scared I don't even care anymore. I just wan't my life back.

I would truly love for anyone familiar with the studies mentioned above to try and explain a bit about it.
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Re: Bulbar anxiety

Postby joycecaroll on April 21st, 2015, 4:04 am

Panic is overwhelming today. I'm at work and I feel like I can't breath. I really need to talk to someone. I'm loosing it. Anyone who feels they have some time to talk PLEASE pm me.
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Re: Bulbar anxiety

Postby trustme78 on April 21st, 2015, 5:16 am

You will be fine.

Even or especially in the light of recent events. It shows how terrible the dreaded disease is. How fast there is a progression until a point where you know there is something wrong.

I will tell you something. I was in a monastery over the weekend for meditation. At one point I sneaked away (something I actually didn't want to do) and looked at my iphone and I checked out the forums. This is a routine somehow for me. Something along the lines of, you are all fine, you are all still twitching, like me. We are all in the same boat. But this time one of us checked in with bad news. And this really got to me. I felt terribly sad when I read it. And here it comes - during the next meditation I wondered if something was wrong with my swallowing. I concentrated on it and suddenly I developed the symptoms. The mind is such a powerful thing.
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Re: Bulbar anxiety

Postby joycecaroll on April 21st, 2015, 10:52 am

Well F*ck. I totally lost it today. I was at work where I see a lot of MND patients. Tongue was twitching away and I tried as hard as I could to just stay calm. Time wen't on and I started to feel the panic taking over. So I PM:d a member for advice/reassurence... It kind of backfired and after that I spent a good hour on the bathroom floor with breathing troubles. Fuuuu.

This is no way to live. I'm 25 years old. The sun is shining outside and everthing is pretty sweet. My life is destroyed because of a twtching tongue. Why, why, why?! It's heart breaking. But the anxiety will stay. It will be here when I go to bed and it will be here when I wake up. Like it has been for over a year now.

I've been having this tongue issue since September. Two EMG's later and my neuro say's everything is fine. I can't believe him because of Eisen's studies. I can't believe him because there haven't been 8 months yet. My neuro say's he's 100% sure I don't have ALS but I can't believe him because he said that after 6 months of fasciculations, not 8.

I really hate my self right now. I wish I could just find some trust. But I can't. There's just doubt.
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Re: Bulbar anxiety

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